Friday, April 25, 2008

I've been doing all this for so long that it is "Normal" to me. The other night, I started the nighttime routine while I had a friend visiting. At first, she pretended not to notice all the medical supplies I was hauling out and lining up on the table. After a couple of minutes of watching me, she finally stopped mid conversation and said " Do you do this EVERY NIGHT?"I was kind of surprised that she was so shocked when I answered yes to her question, then I got thinking about it... This is what it takes to keep David, Ben and Caroline healthy, so of course I do it every night... I don't even think about it... but it is far from a normal bedtime routine!

David gets 2 pills and his Growth Hormone shot... his is purple. Then I give him the bottle of Eucerin to give his scars and skin graft sites a good coating so they don't get dry.. the burn scars and graft scars don't have oil glands so they get very dry if they aren't moisturized 2 times a day.Ben gets 1 pill and his Growth Hormone shot... his is yellow. Then he gets Nasonex spray in his nose, his albuterol inhaler, and just before he gets into bed he gets hooked up to his C-Pap machine... I usually don't have this out on the table, I brought it out for the picture though because it is part of the nightly ritual.Caroline is my easy one... she gets 1 pill and her Growth Hormone Shot... hers is green.

When we are done with all of this, it's time for the rest of the bedtime routine.. showers, PJ's, brushing teeth, etc.

It got me thinking last night as I got their meds ready, how nice it would be for all of us if we didn't have to do this every single night of their lives.. if bedtime could just be filled with end of the day things like bedtime stories and evening prayers. But as I tucked my little girl into bed last night, she wrapped her arms around my neck like she does every night and said"Love you Mom"... That makes it all worth it.

Sunday, April 13, 2008

I had all kinds of intentions of posting earlier this week, but my computer got jammed up with some kind of mal-ware this week thanks to one of my little darlings clicking on a link they shouldn't have. So 5 days and $300 later I have my computer back.

On Monday, I drove Dave and Alex to the airport for an 11 day trip to Germany with the German Club at the High School. Dave called yesterday and said that the trip has been amazing.Here's where they are visiting:MunichDachau (this is one of the concentration camps.. and Dave said there just aren't words to explain it.. he said it was very overwhelming)NymphenbergSalzburg Austria (he was there yesterday when he called me)OberammergauMeersburgThrough the Black Forrest in Bavaria to HeidelbergRothenbergNuremberg

I can't wait to hear all about their travels when they return.

Until then, the kids are on spring break this week, so I am planning some day trips to keep them occupied, Jake has Lacrosse practice, Ben has Baseball, we have Special Olympics... so as you can see, there is no shortage of activities to keep us busy until they return next Saturday.

Saturday, April 5, 2008

I stumbled across the quote yesterday and it has been ringing in my ears ever since. I keep thinking of all the supports we as a family have... of course there is our immediate family, Dave's Mom and Dad, his brother & sister and their families, my sister... my dear friend Regina who might as well be my sister!Then there is Ben and Caroline's birth families... both important parts of our family.Reaching out into the community we have a wonderful support system of very dear friends, many of them we consider "family" to us. These are friends who "get it" when it comes to PWS and my kids... these are friends who are happy and capable of watching my kids when I need help, friends who are an extra set of eyes when we are at a function and David is in seek mode.Then there is my PWS family... they are spread out all over the world... but are a huge part of our "huddle", at the click of the mouse I have 100s of people who I can get direction, support, and correction so that I can regroup for the next phase of the battle. Many I have never met in person, others I have met a few times at conference, but yet we share the common bond of PWS and we are there to help eachother win.

Without this support network that is our "Huddle" we could not do what we do.

I encourage all of you to take a look today at your own "Huddle" to build a strong support network around yourselves, to surround yourselves with people who love you and your family and are willing to go the extra mile to help, and above all... know that you are not alone in this journey.

~Vicki

The Strength of the Huddle

When I asked Mike what he missed most about pro football, I was surprised by his answer. He said it was getting into the huddle. You felt safe there, he said. It was where you could get direction, support, and correction. It was where you could regroup for the next phase of the battle, knowing 10 other guys were there to help you win.Mike said the huddle was a real refuge during away-games in hostile stadiums, when, besides the team, they were fighting a negative environment. It was a place where they could return to for encouragement to keep going.Every man needs a safe place to get what he needs to enter into life's conflict. If a man's going to survive—no, win—the battles of life, he must have a huddle of good men around him to cheer him on and bandage his wounds. He needs men who will celebrate with him in the good times and do whatever it takes to bring help and healing in the bad times.-Rodney L. Cooper in Shoulder to Shoulder

Friday, April 4, 2008

David has been a patient at Shriners Hospital in Boston for the past 4 years. Caroline is a patient at Shriners Hospital in Springfield where her scoliosis is followed.

When David was in Boston after his last surgery, I asked our patient care specialist what we could do as a family to Give Back to Shriners for all the wonderful care they have given us. She explained that the Shriners collect the little aluminum tabs from soda cans and cash them in for money that is used to make purchases for the hospital. It is an easy thing to do and raises lots of money for the hospital.

We came home and I was telling Dave about it. Jake was listening and had the idea of organizing a drive at school to get the whole school to collect tabs. He approached his teacher, got his friends involved in making posters and a flyer that went out to everyone in the school. Each of the classrooms has a collection can and in the first week they have already collected an impressive amount.

I told my Mother-in-law about it and she contacted Shriners on her own and got the information to begin collecting. She made up cans with David's story on them and both her and my Father-in-law are collecting them at their churches (they are both Pastors) and around the community.

I am really excited to see my family so energized to do this... I am proud of Jake for thinking big enough to get the whole school involved and thrilled that my in-laws want to help too!

If anyone out there wants to join us... you can mail them to us and we will add them to our collection. Our plan is to have a huge delivery of them when we go back for Davids follow-up in June.

"God didn't promise days without pain, laughter without sorrow,sun without rain, but He did promise strength for the day, comfort for the tears, and light for the way." -unknown

Our Journey With Prader-Willi Syndrome

Our journey with Prader-Willi Syndrome started on December 1, 1994 when our son David was born.David is our 4th child. We had no idea that our world was about to change forever, that nothing would ever be the same... or what that would even mean..."Your baby has Prader-Willi Syndrome"The words seemed to float around the room, like they weren't really meant for me to hear. This couldn't be possible because we already had 3 healthy boys. I had prooved 3 times over that I could make healthy babies! That's what it was... a mistake... they had made a terrible mistake... they were talking about somebody elses baby, not mine. I didn't hear what they were saying... these words weren't meant for me. I looked at my husband who was holding David and he had tears rolling down his face, but he was in control, he asked the questions, he was crying... I'd never seen him cry, not like this anyway. I was just sitting there like a silent observer to this scene. I didn't belong here, this wasn't my life. We were taking our baby home today and they were wrong. I would proove it to them. We walk back to the NICU with David to pack his things from his 10 day stay. His nurse gave me a hug and I collapsed to my knees on the NICU floor sobbing... It hit me like a ton of bricks.. I am the mother of a baby with special needs. Some syndrome called Prader-Willi... not sure how we are going to do this, we pack our baby and head for home.The firt couple of years were a blur. David was sickly and we were in and out of the hospital with illness and surgeries. There was endless physical and occupational therapy, it took forever to feed him.. he had an NG tube for almost a year and was on oxygen until he was 3. Jacob was born 13 months after David and we were busier than we ever thought we could be. We had 5 little boys and life was good. But we both had this feeling that something, or someone was missing. Then we are told of a baby who has PWS and was in need of a family and we both knew immediately that this is what we wanted to do. So in September of 1999, Ben joined our family at the age of 5 months. He stole our hearts and life was good. We were busy raising 6 boys, everyone thought we were either saints or just plain crazy for adopting a child with PWS when we already had a child with it. Life was good, Life was busy, we wouldn't change a thing.... but something or someone was missing.In May of 2001 I was put in contact with a family who had a baby girl with PWS. They were making an adoption plan for her and long story short, Caroline Grace Elise came to live with us when she was 7 weeks old. We all fell completely head over heals in love with this baby girl! She was the missing piece to our family. Life is good, life is busy.. Our family is complete.7 kids, 3 with Prader-Willi Syndrome, maybe we are Saints, maybe we are crazy, maybe we're a little of both! Either way, life is good, and we wouldn't change a thing.